Lymphedema Treatments Are Poorly Utilized

Lymphedema is an underrecognized complication of cancer
therapy, and even when it is recognized, it is often undertreated,
says Dr. Anna Towers, Director of the Palliative Care Program at
McGill University in Montreal, and head of the university's
Lymphedema Program.

“Of the people I see who have been diagnosed with lymphedema, 99.9% have been followed by their oncologists for10 years, but told their lymphedema is just a side effect of their cancer treatment and there's nothing that can be done,” she said, stressing that the condition should always be investigated because it can sometimes be an indication of cancer
recurrence.

Experts who recently gathered at an international
meeting on lymphedema, hosted by McGill University, agreed that
lymphedema is a condition that carries huge morbidity, and can
even be fatal, but most physicians know very little about
it.

Lack of Awareness of Lymphedema

“Awareness is a big problem because early diagnosis is
essential in preventing progression of this disease,” said Dr.
Horst Weissleder, Professor of Radiology at the University of
Freiburg in Freiburg, Germany. “Physicians need to know that there
are treatments available, and the earlier they are started the
better, ideally within the first few months after diagnosis. The
longer it's left, the more likely you will have changes in the
tissues that make it difficult to treat,” added Dr.
Towers.

Lymphedema is the abnormal accumulation of lymph
fluid under the skin and subcutaneous fatty tissue, which causes
excessive swelling – mostly in the limbs, but also elsewhere in
the body. Untreated it can bloat body parts to up to 3 times their
normal size, causing [lymphedema_and_pain_management|pain]] and producing huge skin folds and the bulbous swellings known as elephantiasis. It can also cause permanent skin changes and cellulitis, and in severe cases it can
lead to a rare form of cancer called lymphangiosarcoma.

Cancer Patients at Risk for Lymphedema

The cancer patients who are most at risk for lymphedema are breast
cancer survivors, who, as a result of either lymph node dissection
or radiation therapy, can develop arm lymphedema. Estimates of the incidence of lymphedema in this population vary from 20% to 40%,
which works out to roughly 40,000 new cases per year in the United
States, said Dr. Weissleder, who is the author of “Lymphedema
Diagnosis and Therapy.”[1]

“Gynecologists will also see lymphedema manifested as leg, genital, or abdominal swelling after surgical removal of lymph nodes, or pelvic radiotherapy for gynecologic or pelvic tumors,” added Dr. Towers. She said that,
typically, lymphedema does not occur until 1 or 2 years post
treatment –but has been known to occur up to15 years
later.

Dr. Andrea Cheville, Assistant Professor, and Director
of the University of Pennsylvania Cancer Center's Lymphedema
Program, says awareness of gynecologic lymphedema is slowly
growing, but until recently “there was utter denial among
gynecologic-oncologists that gynecologic lymphedema could
complicate their treatments.”

Gynecologic cancer

“For patients with a history of gynecologic cancer, if you see any genital swelling, changes in the skin texture, changes in hair growth, thickening of the labia,
the presence of papillomas or discreet warty growths, or
lymphorrhea - think lymphedema,” Dr. Cheville said.

Lymphorrhea (excessive vaginal leakage that is more
watery than a typical vaginal discharge) may be difficult to
recognize, especially if it is occurring intravaginally. However,
physicians can distinguish it from normal vaginal discharge or
vaginal infections in a number of ways. “Many times, vaginal
discharge is whitish or curdish, thick and opaque, but this is
not. Lymphorrhea tends to be clear or a little bit yellow-colored.
If you do cultures on it, it is negative. But patients may
sometimes complain that it is malodorous. Lymph has no odor, but
it is very proteinaceous, which makes it a good culture for
bacteria,” explained Dr. Cheville.

The diagnosis of lymphedema is one of exclusion – and in addition to ruling out
the recurrence of metastatic disease, physicians must also rule
out deep vein thrombosis as well as renal, liver, and heart
disease, said Dr. Towers.

“An experienced lymphologist or a well-trained physician could establish a diagnosis of lymphedema in 98% of cases, based on clinical aspects only,” said Dr.Weissleder, adding that less experienced physicians may find
imaging a useful adjunct.

Clinical aspects include edema that does not respond to diuretics, signs of cellulitis, and the Stemmer skin-fold sign (a fold thicker than 4 mm on the dorsal
aspect of the second toe), he explained.

Goals in the treatment of lymphedema

Goals in the treatment of lymphedema include reducing the swelling and
preventing recurrence, as well as preventing the development of
cellulitic infection, said Dr. Towers. Combined decongestive
therapy consisting of manual lymph drainage, compressive
bandaging, and exercise while wearing bandages is successful in
redirecting the lymphatic fluid into functioning vessels and lymph
nodes, but she says few physicians recommend this to their
patients.

In the case of gynecologic lymphedema, these
treatments must be modified, said Dr. Cheville. “Bandaging is very
difficult because it's tricky to adequately compress the vulvar
region,” she noted, adding that she uses a specially designed
bandage with Velcro straps and odor control pads. She recommends
that unless physicians have training in lymphedema management,
they should refer – but she acknowledges the difficulty in
finding well-trained therapists.

“There are very few therapists who have comfort and experience treating lymphedema, and especially genital lymphedema. Predominantly, these would be physical therapists, but some nurses and some occupational
therapists do it as well.”